Tag Archives: dementia

By Stonehouse, the artist

I just wanted to share this beautiful “live” drawing as a reminder to see past what we think we know about the women around us.

My sister-in-law, Dawn, recently shared these words from a Twila Paris song, “Same Girl,” in the comments at this blog, a post about my mom, who is dealing with Alzheimer’s Disease.

“Picture with me if you can, a little girl in a younger land, running, playing, laughing, growing stronger. But now her aged limbs have failed and her rosy cheeks have paled. Look beyond the lines ’til you remember. She’s still the same girl running down the hill, she’s still the same girl, memories vivid still. Listen to her story and her eyes will glow. She’s still the same girl, and we need her so…”

My mom on the right. 1942?

“Listen to her story and her eyes will glow…” This is true of every woman, from the little girl so small she can barely express in words, to a young woman falling n love for the first time, to a harried wife and mother who is living to serve and run. It is true as the children leave the nest and the gray hair emerges. It is truer than true as age and aches and pains become the norm, And it is true for even the woman who is struggling to maintain some sense of who she is while suffering dementia.

{{Listen to her story: from my youngest granddaughter and the bigger ones, too, to my lovely daughters, to my sister and the sweetest sister-in-laws I have been blessed with to my cherished mamala, and all the dearest of friends and godly women who have invested in me and younger women who so kindly allow me access to their hearts...}}

My mom on the right. 1940?

If some one, anyone, will just listen, we have a story to tell. We know some things, in spite of anything we’ve forgotten or how old-fashioned and outdated we may seem to have become. Because where you are, we once were, too.

My mom on the left. School days. She might be 8 or 9 in this photo.

And to tell you, too, that even as Alzheimer’s robs my mom of more and more of her abilities, her confidence and cognitive skills, what we are seeing is, miracle of miracles, Norma Jean :: the little girl who loves all the pretty things and all the people and has the simplest faith – she re-emerges, she is herself, true and pure. “She’s still the same girl, and we need her so!”

My mom asked me a few months ago, having watched a documentary about the late John Denver on PBS, if I would maybe “go in” with my siblings and buy her a John Denver CD for Christmas. She didn’t want to tax me too heavily, lovely woman that she is. <3

So, Dave made a CD of John Denver songs from his iTunes and I took it to her when I went to visit 2 weeks ago. She was so surprised. She barely remembered the documentary, if at all, and certainly didn’t recall asking for a CD, but she was happy to have it.

My visit this time has a musical soundtrack. And it is the sound of John Denver music drifting from her corner room, from a little CD player she can no longer remember how to work on her own, even though my sister painted “play” in large white letters.

My sweetest mamala is suffering dementia, being treated for Alzheimer’s Disease. And the changes are so gradual if you’re in the room with her, that they’re much less perceptible. But I am not there, so when I visit, changes are glaring, and I lose my breath for a moment when I see another part of her gone. My dad always asks me what I see as different because he is “in the room,” day and night, night and day.

When I visited 2 months ago in August, during our family reunion, she kept asking me what words were on a stitched pillow her best friend had sent to her. “Friendship,” I’d tell her. She’d look intently at it and then say, “Oh right, there is the ‘i.’ Oh, and that’s ‘f’.” Then she’d say, “Friendship.”

15 minutes later, she’d pick the pillow up and ask me again. Everyday I was there, several times.

I asked my dad, “When did she begin to lose reading?” He was so surprised, he had been wondering why she wasn’t reading her Bible each morning like she always has. Reading is not totally lost to her yet. But it mostly is. She still keeps her Bible and her beloved dictionary close by at all times, but they are rarely opened. Sometimes she has to really focus her gaze for a long time to make out what the newspaper article is about. And if the article is continued in another column, or heaven forbid, on another page, she thinks they somehow just quit writing and finds it foolish for them to have done that.

This time, my most recent visit, she couldn’t sing Mairzy Doats, a beloved song from her childhood, with me anymore. Wherever it is she is going, down whatever hall dementia is taking her, that song doesn’t make sense and those aren’t real words so she cannot remember them at all. And she has no desire to recall them. My mom sang that to me my whole life. Then she sang it to my children. She and I sang it to some of my grandchildren. She always thought it was so funny and delightful, singing those tricky words that were really other words. But now it’s just “nonsense” to her, which it really always was, I guess. But still.

My main goal, when we are together now, is to laugh with her. Laughter is so good for the bones.

So she wanted to listen to John Denver’s soothing beautiful music. She particularly loves Rocky Mountain High and Sunshine on My Shoulders. And the song all our family legends are made of was on repeat one day, Back Home Again. She had to call to play it and sing it for her best friend in Tennessee. She mostly hummed, unable to recall words she has always loved. And she’d comment to her friend when a line of the song said something sweet, like, “…the light in your eyes that makes me warm,” She’d say, “That reminds me of you, Ronnie!” It was sweetness.

But all week, Whenever the song, “Leaving on a Jet Plane” began, she’d come and hug me and say, “Oh, I don’t want you to go…how many more days do I have?” And I’d usual just say, “I’m here for a whole week,” even as the week was moving along. Because it would put her at ease and she’d say, “Oh, good.”

Then we’d giggle and sing along with John Denver, mom mostly humming and inserting comments.

‘Cause I’m leaving on a jet plane, don’t know when I’ll be back again*

“You better get back here again quick!”

That is so true, mamala. I know you won’t see this blog (computer navigation was one of the first things to go), but we’ll laugh about this in heaven…

A couple of days before I had to leave, three of us were sitting on the love seat singing together, my mom, my little sister, and me. It was hard finding songs my mom could recall the words and following lyrics on the computer was’t working either. I went to a karaoke site and pulled up “Leaving on a Jet Plane.” We started singing away, getting that tight 3-part harmony from heaven found among family members alone.

But as we came to the words, “So kiss me and smile for me, tell me that you’ll wait for me,” I had to look away and I couldn’t sing. A catch in my throat and the tears began, because I heard her singing the words, but I knew, she won’t be waiting for me. She is going to keep walking this path and each time I see her, there’ll be a little less of her there.

I have heard Alzheimer’s called The Long Goodbye. And so it seems it must be. My sorrow at watching her have to endure not just the memory loss, but the confusion, the frustration, and the growing inabilities to do what she loves is compounded by living over a thousand miles away. Knowing my time with her will be so limited by the miles between us, I will take every possible second of this long goodbye to hold in my heart.

Every chance I get, I will go to her and bless her and praise her for the woman she is and hug her tiny self as long as she wants (and she loves long hugs). I’ll massage her shoulders and brush her hair and stroke her face and let her curl up on my lap like she is my little girl. There is so little I can do, but I’ll hold on as long as she needs me to….

Hold me like you’ll never let me go*

“Give her everything she deserves!Festoon her life with praises!” Proverbs 31.31 The Message

Learn more from The Alzheimer’s AssociationAlzheimer’s is the 6th leading cause of death and is not just about having a diminishing memory. As the disease progresses, a person with Alzheimer’s loses their ability to walk, to sit and eventually to swallow. Please pray for my sweet mamala, if you will. *Norma Jean*

“I don’t know why I have all these things,” she said. “I guess I just like to collect pretty things, anything at all that is pretty. I just like them.”

Mom is aging. Mom is losing memories to that dreaded disease {we can barely whisper it, dementia}, like the autumn tree loses leaves, softly, quietly ~ leaf begins its’ descent, down-down, a swirl and a sudden swoop upward, then, swept away in the wind, settling in a crevice on the earth’s floor.

And she has a drawer, or two…maybe 4 in which she has stored photographs and newspaper articles and pictures of puppies and magazine tear-outs of scroll-y art which she plans to glue to an envelope or piece of paper for writing lovely, loving letters to some one she cares about.

“I just wanna take pictures of the whole world.” -Norma Jean, my mamala. November 2013

Some of us wish to “help her clean” those drawers, to lighten her load by getting rid of things and scraps we are certain she doesn’t really need. I start to offer my help, I resist this urge. Because despite the diminishing certainty in her brain, and that facts and details are being swept out to a sea of forgetfulness (how very God-like, really, isn’t it?), these notes and papers and pictures and print-outs are all important to her, her tangible hold and her physical memory. She wants them, needs them, she desperately clings to the information they hold for her.

I resist my urge to purge on her behalf. Instead, I let her pull them out again to recount the story of why she loves each one and her plans for what she’ll do with them. “I’m going to make a book of cars for Hunter to read to Kai. And this is a cartoon I thought Ronnie May would find so funny. Oh – look, here is my pattern for those Christmas-card trees I’ve been wanting to make…”

I note something very new on this visit: I have a terrible time getting her to go for walks – this woman who has always loved outdoor activity and horseshoes and playing baseball and lassoing imaginary cattle. Fear is the cruelest part. She fears the walks on uneven surfaces because of the falls of the past year. But when finally I get her there, her most vibrant, youthful, excited self shows up to investigate the woods and explore the paths with utter abandon and childlike enthusiasm. She out corn-holed both dad and me, twice! And she’d have kept throwing those corn-filled bags if night hadn’t fallen fully.

For my mamala is losing pieces and snippets

{a few leaves flutter to the ground around us on our walk}.

She is missing moments and words are escaping her

{a breeze – then swirls of yellow leaves swish and swoop finally making their way to the ground}. There they go–

{the larger Elm and scarlet Maple leaves whisper as they pass us falling to the earth}

Then in a sudden flash of exuberance, “Oh look at that leaf, will you?” she’ll ask, and she picks it up from the ground and with it comes a vibrant, razor-sharp recollection. And I’ll hear a story with detail-complete clarity and accuracy, but one I may never hear again – because she’ll remember it no more.

She sometimes knows with utter and complete understanding, and seconds later is completely unaware that it is so. And I have no desire to rush this process. For whatever she loves, I will love. Whatever brings joy to her heart, I will find joy in, through her eyes, Please help me with that, Lord. Help me not to rush these days and these “silly things” she collects with child-like delight. Oh God, help me hold her most valuable treasures for her, as she loses the strength to do so…

She makes me laugh, her sweetness.

An assortment of colorful leaves falls from her handbag as I help her search for her wallet. Because. They are pretty.

“That’s just me, I reckon. I collect pretty things.”

This morning, rising early, I saw her on her back deck which faces the eastern-sky, just as the sun was rising and flickering through the tree branches which have formed a black lace as they have started to bare. Beyond the expanse of grass, a wooded area where she daily enjoys the deer family as they graze, the sun began to emerge, finally exploding into bright light just above the trees. It is where she goes to watch and wait for the return of Christ each morning. I stood in the shadows, on this morning, and watched her worship, watched her raise her arms to welcome the day, to tell the Lord she looks for His return. Every part of her open, loving heart belongs to the One she longs for…

“The Spirit and the bride say, ‘Come!’ And let the one who hears say, ‘Come!’ Let the one who is thirsty come; and let the one who wishes take the free gift of the water of life.” Revelation 22.17

True story: {she is this very second showing me her biggest, prettiest Maple leaf, making sure I know all the reasons it is as beautiful and special as she thinks it is}…and I look at gentle and animated, piercing-blue eyes with a halo of ever-whitening hair, and I say yes, so beautiful, mamala – deeply beautiful, for so she is.

Even so, come, Lord Jesus…my mama is looking for You. And that, she does not forget.

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NOTE 10.28.15::I just wrote about my recent trip to visit my mom and mentioned the dreaded “A” word for the first time (Alzheimer’s Disease) on this blog. You may read about it HERE

We walked the meadow behind the house. We walked it again and again, my mamala and I, this past week when I went to visit. The trees were barely turning and the assortment of wildflowers and weeds were thriving in the mild midwest autumn. Butterflies and moths darted flower to flower, a cow moo-ed just beyond the treeline.

“I think that cow is hungry,” my mom told me following each moo. She wants to feed all the hungry, like always.

Camera ever in hand, she took pictures of every possible thing out there, because, as she told me repeatedly, “Everything is just so beautiful! Do you see this? I’m telling you, it is just so beautiful!”

And I thought the neighbors might wonder why on earth she was snapping pictures of a weed gone to seed, or a whirligig on her back fence, or the clouds in the sky or a tree, then another and yet another, and sometimes a single leaf? A pretty rock? *snap* The neighbor’s barn? *snap* These purple flowers? *snap*snap* Oh, but wait…those purple flowers, too *snap!*

As if she heard my thought, she responded, “I know people might wonder why I am taking these pictures, but I just love life! I do! I love everything about it and God made everything beautiful! Everything is just so beautiful, I’m telling you!”

And in the time we’d walk and talk and sing and snap pictures, she’d tell me the same thing over and over. Everything is just so beautiful! Every-thing!

Because she really didn’t remember she had just told me…3 minutes before. And she wanted to make sure I would know.

My mom has dementia (most likely caused by Alzheimer’s Disease). I have wanted to write about it, but couldn’t because on occasion, though her computer skills were among the first of the losses, she might still have occasionally found her way to my blog. But no more. And each time I see her, I see less of her. So I am keen to hold on to what remains: her wisdom, her laughter, her zeal for nature and taking pictures. She still hugs me like there is no tomorrow (does she know?) and tells me I’m wonderful, my biggest cheerleader. She is losing dates and names and physical strength, but her creativity and love for beauty and her love for family remain intact. So far.

So each trip to see her, I look for the message she is still intent on writing on my heart (ever my mommy). This time it is this: No matter where you are and how unsatisfactory the circumstances might seem, look around, Jeanie. Open your eyes. See all God has done. Everything is just SO beautiful – you are surrounded by beauty.

I hope I get my mom’s loving, appreciative, grateful, beauty-seeing, clear-visioned eyes. I think she is trying to impart them to me.